Hurry up and wait 🙁
Hi everyone! I'm so glad to have found this website and resource. I'm 41, mom of 5 kids (we had twins at the end lol), I'm in nursing school, I found a lump, waited 3 weeks for mammogram and ultrasound at KU. I was just diagnosed with DCIS, grade 3, lots of comedo necrosis, ER- and PR-, multiple masses that hurt (I don't know why) on my right breast. I was trying to fit in a double mastectomy during my school break, that is only 2 weeks long, but I was trying to stretch it into about 4 with my school's approval. I met with a surgeon at KU, only to find out at the end of the appt that she was going to be gone during those 2 weeks I'm on break :(. Her PA that came in before her said since DCIS is usually not palpable, and mine is very palpable in lots of areas, that I would probably need chemo after surgery. To me, that is the real, dreaded, "C" word. I had a breast MRI with contrast on Friday. I might be able to be squeezed in on June 9th, otherwise I have to wait until June 30th :(. My breast is actually hurting and I feel like I can't wait that long. I'm asking the nurses if I can just go with the first available surgeon; but then they have to match it up with a plastic surgeon, etc. At this point I feel like I don't even care about reconstruction, I just want it gone. Today is my first day that I've been really crying about it. I've been so busy with wrapping up my quarter with nursing school, all the kid's stuff (baseball, etc), and trying to put on a happy face for everyone. I really know that it could be worse. That DCIS is ideal. But I just have this feeling that after my mastectomy pathology gets back, I'm in for a longer road than I thought. Oh and my husband is amazing; he is retired Navy after 23 years, was working for the Dept. of Homeland Security and has now lost his job (DOGE and all that). I am using his GI bill to go back to school, and we were kind of counting on the housing allowance money I am receiving. But now it looks like I have to take at least a quarter off, which I really didn't want to do. It has been my dream to be a nurse and now this. I feel so deflated and angry. I've been running a lot to help with the stress, but of course, today is so gray and rainy, and I have matched my mood to it.
Questions: How long did you have to wait to have surgery after diagnosis? I'll be going over 6 weeks if I have to do the June 30th one... Is that unreasonable?
Any suggestions for staying positive through this? I am a Christian and have an amazing church that I know will take care of us, and I've been praying a lot. I just hate waiting...
Also, I would love to get together sometime in person- at a restaurant or something- I live in Nottingham by the Green if any of you are familiar with that.
You poor thing! First of all, I'm sorry you had to wait 3 weeks for a mammogram after finding a lump. That is agony! Second, I'm confused about what the lumps are because I wouldn't think you could feel DCIS, but I'm no expert. Do you have multiple locations of DCIS? (Still, I don't get it....) Third, did your doctor mention chemo, or just the PA (who probably needs to stay in their lane)? Don't get ahead of yourself about chemo, or about anything, really. That is definitely one thing I learned. I had a kind of breast cancer that can be associated with stomach cancer, so the first time I read about people preventatively removing their stomachs, I flipped out.
To answer your question, six weeks is not unreasonable, in general. Your cancer is grade 3, which grows quickly, but they must have no concerns that it will invade the surrounding tissue and spread to the lymph nodes in such a short amount of time if they are giving you that timeframe. Your wanting to get it over with is a whole other thing, and I get that!
I am not surprised that you are feeling a little down with this gray day. It's that kind of day. You can only stay "up" so long, and you've been powering through and putting on a brave face. We have to have those low times too where we let down our guard and let it out. (I cried in the shower a lot.) Allow your negative feelings. For me, I think they pass faster when I don't resist them.
I'm glad to hear that you're turning to exercise for stress relief. That's a fantastic outlet. Maybe try something indoors today, like yoga. Or put on some music and move to it. There's a breathwork video on the video section of this website that is helpful.
Hang in there. You are in the worst phase, where you don't have all the answers. Most people feel better when they have a plan. We are here for you.
@janedoe7 thank you so much for your thoughtful reply; and just validating my feelings! Yeah, I don't get it about the lumps and DCIS either. My doctor did mention chemo, and it will be warranted if the mastectomy pathology comes back as invasive; but again I'm feeling like it will due to the size of the tumors.
From mychart: There are multiple masses and non-mass enhancement within the upper outer quadrant of the right breast, 2 masses of which contain HydroMARK tissue markers and are consistent with the biopsy-proven malignancy. This process measures at least 5.2 cm AP by 3.6 cm craniocaudal by 4.5 cm transverse, and enhancement is within 3.2 cm of the base of the nipple.
Doesn't that seem big for DCIS??
Yes, but I just googled it, and DCIS can be much larger than I thought. It’s hard to tell what “this process” is referring to above, because multiple areas are mentioned. Is it possible “this process” is referring to the whole area, which includes some masses (that have been sampled and have markers in them) as well as the non-mass enhancement, which could be nothing?
@janedoe7 yeah that's a good point. I just know I can feel them. What is your breast cancer story btw if you don't mind sharing?
Different from yours. Post-menopausal, Stage 1, no symptoms, found at my annual mammogram. Treated with lumpectomy, radiation and hormone blockers. I had a few frustrating and painful side effects from treatment but otherwise was best case scenario and I’m super grateful about that. I did genetic testing and everything was negative. Again, super grateful.
@janedoe7 thank you for being so interactive on here!! I'm sure lots of people appreciate it :). I know I do!